All going great!

At the moment things are going really well.

Bianca is happy to eat whatever I pack for her school lunch and I feel quite proud of myself for packing something that is relatively healthy, so that is good. And I think she's definitely using more energy than before because often when we come home, she complains that she is hungry. So, pretty good appetite-wise. I was worried that the eating would become a struggle and thankfully not at all.

Next week will be interesting as Bianca starts her monthly Dex and some people find their kids don't cope well with school and Dex. But I've warned Bianca's teacher that things will most certainly be a bit different. I'm crossing fingers and hoping for the best.

Bianca has also now learned to swallow her 400 mg Aciclovir tablets. She can manage them when they are in 200 mg doses as the tablet is smaller, but the 400 mg one is much much bigger and we would usually cut this one in half. But the last few days she's been doing great with this huge tablet and swallowing it without it being cut. I have to say the pill swallowing kit that Kate, the most wonderful play specialist, put together for us has been the best thing ever!

Foreign territory

Today I became one of "those" parents. You know the kind whose kid acts up in public and can't seem to behave properly... Yes, that kind.

This morning I took Caitlyn to a Jumping Beans class. We decided that the time has come for Caitlyn to start doing some social activities. So we booked her in, I checked whether they would be prepared to distribute a note about Bianca and the risk of chickenpox to the class and so on.

When we got there, Caitlyn went crazy. She rushed from one activity to another and generally had the best time ever. Until it was time for us all to sit in a circle and do a structured activity. She wasn't interested in clapping her hands to the music, finding her ears, wiggling her fingers (usually at home we have no problems whatsoever), but today there was no way she wanted to sit still while there were so many other really fun things to do. So we had a few moments. It didn't get much better because at one point she bumped into another baby and then pretty much just got over-excited towards the end of the session.

All I could think about was when we used to take Bianca to Tumbling Tots - a very similar programme, there was a little boy whose dad must have been quite exhausted after each session. He was one little bundle of energy. So throughout the session all you would pretty much hear is (let's call him Jake - no reference to any Jakes attending Tumbling Tots) "No Jake" "Come here Jake" "You cannot go on that right now" "Sit still Jake" and I remember sitting there wondering why Jake wouldn't just listen. So there I was today doing the same thing and I wondered what all the other mums were thinking. But of course the last time Caitlyn went to any structured activities was before she can remember. Of course there is nothing wrong with Caitlyn's confidence, it is just the group activity that didn't really appeal to her. So sorry Jake, I can't say I knew your circumstances and was perhaps a bit too quick to judge.

Of course the session also once again reminded me how very different our lives are in comparison to other people. It isn't just as simple as arriving, having fun, having a chit-chat and leaving until the following week. Going to something like this does take an awful lot of energy, forcing ourselves to give up the safety of our house and swapping it for a situation that could possibly be risky. There is very much still the worry that if Caitlyn had to pick up chickenpox or measles or something like this, that this would put Bianca at risk. And really our only way to try and limit the risk is to distribute a note to other parents to ask them to let us know as soon as they notice any symptoms. So during the session it was discussed, but then instead of handing out the notes, they left it on the table thinking people would take one as they leave. This unfortunately didn't happen and we'll have to discuss this again next week, because it is important that people are able to phone us.

Today I had a question whether Bianca is busy building an immunity against these type of diseases. No she is not. As long as she is getting chemo treatment, her immunity will be suppresed. Now there is a chance that she may have retained some immunity, but we won't know until the end of her treatment when they will do a blood test that will tell us which diseases she still has immunity for and which she doesn't. There is also a chance that she didn't keep any immunity, in which case, she will have to get all her immunisations all over again. So until we reach that point, we have to treat all these diseases with extreme caution. Not only could they be quite serious for Bianca, but if she did become infected, then she will also put other oncology children at risk.

At school today, one of the teachers (I understand not her own teacher) accompanied Bianca's class to one of the physical activities and on the way to the hall, Bianca fell. This teacher expressed concern that Bianca may have done this on purpose to get out of the activity. I would be quite surprised if this was the case. Certainly Bianca has never deliberately done something like this just to get out of an activity and certainly nobody has told me that she wasn't too keen on doing this activity. So this evening I emailed her teacher and asked the circumstances i.e. was the path slippery, was she accidentally bumped, was it possibly on an uphill? I decided to email her a list of the likely side effects because I know that drugs like Vincristine could be the cause why kids could possibly not be as steady on their feet. Fair enough it is possible that Bianca might not be able to keep up with the class when they do physical activities, in which case she may not enjoy the activities and then maybe she might be trying to get out of the activities (but to hurt herself - I don't know). I noticed this afternooon as school was nearly finished, Bianca and her friend was asked to go to the office to collect something. So they both ran to the office and it wasn't long before her friend was way ahead of her. Bianca gave it her all, but she just couldn't keep up.

Sometimes I wish this journey was more straight-forward. This is foreign territory for us and certainly for the teachers as well. And it is quite hard getting your head around this. I have to admit it is not that easy knowing whether you are dealing with behaviour or side-effect and there is a worry that the side-effects could indeed lead to certain behaviour by the time the treatment is finished. After all, we are not just talking a few months, we are talking years.

409 days to go, 409 days to go - I cannot wait to get to September 2009 (although it will most certainly come with its own challenges).

'Hair' we go again...

Bianca is definitely losing some hair. It looks a bit patchy. I mean she still has hair, but there are definitely some spots with much less hair. I'm wondering why she would be losing her hair again. I know one of the side-effects of the Vincristine she gets once a month is that she would lose her hair, but I also thought that once she reached maintenance that was the end of "no hair". Would be interesting to find out from any other people who are on or done with maintenance for A.L.L., whether they had some hair loss as well. But either way, we'll be checking with her doctor, just to check.

Between yesterday and today Bianca has been complaining of a sore tummy. It doesn't seem to bother her too much, but every so often she will say "my tummy is sore". So we'll keep an eye on that one, when she was still on her Delayed Intensification phase, a sore tummy was the only indication of her having an infection - although she was also not really herself at the time.

Last night I got a bit of a fright when Bianca's temp went to 38.2 and of course that would just be my luck because I haven't packed a bag for just in case and above 38 means "go to hospital". But a few minutes after that it showed 36.5 (so false alarm - big sigh of relief!!!). Today she's been fine. Not a big appetite for lunch (but then she had a big breakfast) and otherwise she seems fine and whilst there are some minor cold symptoms at the moment, it doesn't seem to bother her and she seems to cope quite well with it. I'm really really glad!

Coughs, sneezes and a blocked nose

This morning Bianca had a few cold symptoms, and I asked her teacher to keep an eye on her. And as things go - at around 12pm Bianca had a slight fever (37.5). I was at school as they have assembly on Fridays around this time and parents are able to attend, so we agreed that they would take Bianca's temperature after assembly.

Assembly is really well done and each class gets a turn to participate in running the event. Not sure when Bianca's class will have a turn, but today was one of the junior classes. During assembly the headmistress introduced Bianca to the school and other teachers and reminded them about some of the important processes in place to keep Bianca safe.

When we took Bianca's temperature just after assembly - it was sitting at 37.4 and I decided to bring her home. Bianca was participating in her class activities, but she was quieter than usual, so it was better this way. Throughout the afternoon it fluctuated between 36.5 to probably around 37.2 or so, but luckily so far not higher than that. And I'm pretty sure this is as a result of the cold she has. Well, I'm pretty sure she has a cold - some coughs and sneezes and a blocked nose. Oh lucky us!

So now it is wait and see (and perhaps being on the safe side and have a bag packed just in case we'll have to stay in hospital).

I'm hoping the monthly IVIG transfusions will give Bianca a better chance to fight this cold.

Making the best decisions we can

This morning there was an article in the paper about parents who opt to freeze their daughters' eggs before cancer treatment in the hope that one day their children will have a better chance of having children.

I remember having this discussion with Doctor Anne last year on the 5th of June 2007. This was the first time Bianca went to theatre and she had a bone marrow biopsy and her first treatment and they managed to establish exactly what type of leukemia Bianca had. The day before we knew that Bianca had leukemia, but we didn't know what type, her prognosis or anything. So there we sat in this tiny little room. I knew we were going to have a meeting and I sat there with my little list of questions, one of which was Bianca's chance to have children. The answer to this: "we don't know". Unfortunately it is true that a side-effect of some of the chemo drugs is that it can cause infertility. A sad thought when your little girl is only 3.

The problem of course with Acute Lymphoblastic Leukemia is that you have to start treatment straightaway, you cannot sit and wait, so for us the important thing was to start treatment and then deal with side-effects later on. Of course Bianca was only 3 at the time and then I guess we'd have to ask how effective a procedure such as this would be for her? So in all honesty I can't say that it is a subject we researched to such an extent that we were able to make a decision. Our doctor wasn't able to assure us that it would be in Bianca's best interest or that it would guarantee or improve her chances. Then rather treat the cancer straightaway. In any case it wasn't as if we had weeks to look into different options or to research things like this, it wasn't as if we could get second opinions. It was pretty much like being pushed off a diving board - we had no choice but to move forward. And that's what we did. We didn't dwell on the "what ifs" We focused on now, on being positive, on making things as happy as possible for Bianca (and us).

I recently read a book called "Hannah's Gift" and the one thing I remember reading was where the doctor told them to always make the best decisions with the information you have at the time. In this journey there will be many times that we think "if only I did this or that or the other", "if only we didn't do this or that or the other". And of course many people from the sideline who will stand there and say "If it was me...".

And right now? Who knows what lies around the corner? Who knows what long term effects we will have to deal with? Who knows? We cannot choose the things that happen to us, we can only choose how we handle these things, and that's about all we can do, every day.

What's in a name?

When we chose a name for Bianca, Terence wanted to call her "Bianca" because it means "white" in Italian and of course with our surname being White he thought this would be perfect. I had to put my foot down when he suggested "Lily" as a middle name for Bianca - because Bianca Lily White would just be overdoing it. And with his sense of humour I had to endure suggestions such as "Snowy" (which drove me mad). I thought the combination of Bianca Marie White would go quite well until somebody pointed out that it would spell "BMW" and that was the end of that idea. So in the end Bianca became Bianca Leigh White.

And then with Caitlyn I insisted on choosing her name as Terence chose Bianca's name. So I chose Caitlyn (just because I always liked it) and Anne as a second name (because it goes quite well together) - no particular reason, I just liked it.

We didn't want to choose family names, but wanted our kids to have their own names.

I do find it amazing that some parents would give their children some obscure names that they would have to live with for the rest of their lives or names that nobody could ever pronounce. Of course celebrities do it all the time - take "Apple" for example. I wanted names that wouldn't become the object of ridicule, that would be easy to spell and pronounce.

So when I read this article I can only feel so sorry for these kids. Imagine being named: Number 16 Bus Shelter, Violence, Benson and Hedges (given to twins), or Talula Does The Hula From Hawaii.

Kia ora to you all!

It is Maori Language Week this week and so we'll start off by saying Kia ora!

Is it Thursday already? I can't believe that this week is going so very quickly and certainly our lives now have a slightly different routine. A good feeling though that things are pretty settled at the moment. Bianca seems to cope really well with each day at school and every day I ask her "what did you enjoy the most?" she would then answer "I loved it all". And the exciting bit - Bianca's already made 2 friends.

Of course in a bit more than a week we'll start with steroids and I've been warned that school and steroids don't really mix very well together. So it will be interesting to see how it goes.

It seems as if Bianca is losing some hair again. Not lots and lots, but certainly if I run my fingers through her hair then I see some hair in my hand and I also notice it on her school vest when I get her from school in the afternoons. So not too sure if this is thanks to the Vincristine or not. I'm really hoping she won't lose all her hair again. But this is probably just me being paranoid a bit...

Star of the day

Bianca had another great day at school. She loved it very much and felt so proud that she was awarded "Star of the day". So she got a little backpack filled with fun activities to do. We need to take this backpack back tomorrow so the next "Star of the day" could have a turn as well.

And she seems to be quite happy eating the stuff we pack in her lunch box (well most of it anyway). I guess in some respects peer pressure is a wonderful thing... So I'm really happy about this. I was worried that I would have to try and work around eating problems which might stretch my creativity just a bit...

We have reached the halfway mark in our treatment plan. I can't help thinking of the one Shrek movie where Shrek and Donkey have to rescue the princess. When they reach the bridge, Donkey is too scared to cross the bridge and tells Shrek "but I know that half is safe".

I guess it is a little bit like our journey - because we know where we've been, we can say "we know that half is safe". The truth is we don't really know what lies ahead for us. We can only hope that, with the knowledge we've gained so far, we are well enough prepared for the next 415 days. So here we go...